Saturday, October 27, 2012


Every now and then I like to reflect back on my life and evaluate what has happened. It was about this time last year that becoming more active in the awareness gig was more and more important.  I felt such outrage when I heard about fellow pain pals needlessly suffering.  The ignorance of the medical community as well as our peers made me see red.  I was frustrated with myself and with the fact that it was clear that I was only getting worse, and getting back to work wasn't an option.

There was a time when I considered myself a realist. That meant that not only did I see the glass as half empty, I fully believed that what was left would be taken away. Expect the worst and hope for the best was my philosophy.  It worked for a while.  When my niece died from SIDS, I needed to find some way to deal with it.  Being a realist wasn't helping me cope.  There had to be a reason for this, some justice or a bigger plan.  If that wasn't the case life was just not worth living, which is how I felt about it.  This taught me to start looking for the good in everything, including the death of Katherine Mary.  I saw how her life touched others and the ripples from that touch, even though she was only seen alive by a few of us.  She lived 16 hours and in that time she changed lives, and maybe still since I’m talking about her now. I looked at all the good things that came from her life and how it changed me.  I've always loved the movie “It’s a Wonderful Life” because it showed how one life touches another and how a simple act of kindness can mean the world to someone else.  This was the real life version of that.  I looked at my life then and saw all of this.

Flashback to 2009: that was the year I found Facebook.  I had just resigned from my job as an instructor at the dodo, and I mourned that part of my life.  I cried when I realized that I was no longer that reliable person; I felt horrible to let my sensei down. That wasn't who I was as a person.  I have always loved to help people, and now not only was I not helping I was being a hindrance. 
I had found Facebook though and with that came friends from HS.  One of them happened to be watching the news and saw a news clip on the medical section about this device being used in clinical trials for chronic migraine, so she thought of me.  I got the information and called the next day.  It was a Friday.  I spoke to Maria the nurse assisting with the study and she told me that one of the conditions of the study is that I would have to stop Botox.  As it happened my insurance was being an ass and denying it, so fate made me able to qualify.  The down side was this: there was a possibility that I could be in the placebo group, and that meant 6 weeks without anything.  My pain was already off the charts.  Botox was helping significantly with the muscle tension and pain I had in my face, head and neck, the thought of life without it was terrifying.  I told Maria I would have to think about it, but I would let her know by Monday.

That weekend was one of the longest weekends of my life. I needed help. I was desperate enough to try an experimental surgery, but the time without any meds to assist and knowing the pain I would be facing terrified me.  On the other hand there was that chance I wouldn't be in the placebo group and I would get some relief. I struggled back and forth and was not going to do it; I decided that the pain was not worth it.  Then something happened that I hadn't ever considered: my daughter got her first migraine.  That changed everything.  This was not about me anymore. This was all about her.

There was no way I could leave this legacy of pain to her. I called Maria and said I was in.  This was a way to help myself and thousands of other people, and to be proactive about finding help for my daughter.  Fate was with me and everything flew through.  All lights were green.  I had my first surgery March 30th.  I even felt great after the surgery. I had really good pain meds. If I hadn't had staples in my chest I would've felt like I would've gone to the dodo.
That didn't last.  I went to get programs for the newly implanted device. My doctor didn't do external trials at this time so there was no way to tell what would work before surgery. It was horrible; the leads weren't deep enough and it was like being stabbed with a thousand pins all over the back of my head, and I could only use it sitting a certain way and only for a few minutes. It was clear that another surgery was needed to fix it. So in June I had another surgery to put them in deeper.  It made a huge difference: clearly I wasn't in the placebo group.  I went and got a few programs and I improved.  September came and so did the evidence of a staph infection, which meant another surgery. The whole thing had to be pulled out.

With each surgery I was given the option to opt of the study.  They felt awful that I had to go through all of this, including having to shave the back of my head now for the 3rd time.  They completely understood if I wanted to be finished with the whole thing after all I've been through.  I again thought of my daughter, my own pain, and then all of the people I could help. I had six weeks to think about it. During the time that I had it from June through August, did it really help?  Was it worth going through all this again? They would be doing it on the other side of my body so that meant more scars, two on my chest where my battery was and would be.  As the surgery date approached in November, each day I was more and more sure, that YES it was worth it. 

From that point on I wanted stims for everyone! I had a much more successful program. It has been running for 3 years. I believe that out of the group I was in of 150 people, mine was the only problem. They were stunned that when the stim was turned on that the relief wasn't instant.  This just dawned on me last month.  I did realize in July, during my trip to Baltimore and the Migraine in the Mall event, that I had achieved a level of pain relief that I had never had before.  Finally my insurance stopped being difficult and I had the coverage and dosage I needed, and my meds and the stim had brought me back to a place I hadn't been in 10 years.
My kids have no idea who I am.  They don’t remember a time when I wasn't sick and they have had to learn how to live without a mother for the time it took to get to this point.   I knew three years ago that this thing was going to be huge and if I could do anything as far as advocacy it would be because of this device.  I have to laugh when people tell me that it seems to them that lately that I've been "stim, stim, stim." There has never been a time that I wasn't "stim, stim, stim." This isn't a cure, it is just a way to deal with our pain.  It is the first step in the awareness that there is a problem and that we need the research to find a cure.  I don’t want my daughter to have to become chronic before she can get help and then have to have a stim like I have. 

Technology evolves so fast that in six months your phone is outdated.  In the three years that I've become active in the migraine community and I've made some close friends.  I knew that they could benefit from this type of surgery and all this time I searched for a place like Advanced Migraine Relief and Treatment Centers to be able to bring that relief to us.  Well, they found me because of the ribbon I had created less than a year before to help raise awareness for Chronic Migraine
So here I am three years later and I've now formed a Nonprofit Organization. The ribbon has just had its first anniversary.  The support group that only last year was a small chat group to escape the discussion of episodic migraineurs, now has about 700 members.  The public page went live in November and now has close to 1,700 people. What started out as a way to save my daughter from this existence, has become my life’s mission. I’m not giving up until she has better choices than we have. My grandchildren will know that migraines were something that kind of sucked to have, but they don’t need to worry about them, so next topic.  Chronic Migraines will be the new Polio. 

I have done what I set out to do in starting to bring the stim to those that needed it. The next step is bringing about awareness.  We need to educate the medical and lay person that this is not a headache. If it were easy to treat we wouldn't be suffering. There is no joy in this life, there is only suffering and agony. Until there are better options for my daughter and her children I’m going to keep on going. The bonus is that along this path I get to pick up those who need relief and bring them along with me. 

Sharing treatments that have had success in relieving my pain, as well as things that have worked for others, will always be a part of CMA. Helping people find options for themselves is so incredibly important. When before I looked back at the things that were, now I see that the what started out as ripples are quickly becoming waves is something I would love to share as well.


  1. It would be great if you'd name your "device". Are you talking about an occipital stim or a deep brain stim? I had a CSC for cervical neck pain, a trial for the occipital one and am now considering a pain pump. Thanks, Siggy

  2. Thanks Siggy, I forget sometimes...yes it is an peripheral nerve stimulator for chronic migraine as a diagnosis. the clinical trial was for a 4 lead system to be placed occipitally.

    I have the x-ray from my Dec trial. I'll try to add it. The Dec trial was to add the temporal or eyebrow leads to add to the coverage but it failed, and set me back about 3 years it feels.

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